I kept up this blog while Angelee was struggling so much, as it was a way to 1) keep everyone posted, and 2) write down my thoughts as a way to sort them out. I'm so grateful for the love and support so many of you have shown!
Since she is doing so much better, I have a hard time finding things to write about on a regular basis. Besides, it's kind of not fair to be writing about only one of my wonderful children (yes, I'm terribly biased. I'm supposed to be!). I do keep up another blog, all about the daily doings of our funny family, and I do write about Angelee quite often. She's mixed right in there with a favorite recipe or two, laugh-worthy quotes, musings, and events of the people who live here.
You can find us at AnitaKnapp. I hope we will see you there!
P.S. Yes, I'm "Anita," and all of our kids have fake-o names, too. It's my way of preserving a bit of privacy, but those of you who know us will be able to pick us all out! :-)
Tilt Photography
Thursday, April 19, 2012
Thursday, September 8, 2011
A Year Ago Today
I got a phone call about an hour ago. At 10:37, to be exact. It was Trent, remembering the moment, one year ago today, that our little angel tried to fly out the window. He wanted to talk to Angelee on the phone, and drank in her happy little voice as she cheerfully described all the toys she had been playing with. We are both overcome with gratitude that we still have her with us.
So what has she been up to? This summer she flushed half of a package of feminine products down the toilet, resulting in our basement flooding with raw sewage. She single-handedly got us three floods, four costly visits from the plumber, and a forced evacuation for a week.
This was followed up by her tipping her chair over and crashing into the sliding glass door. The whole family watched. She was very still, staring straight up while sitting in her booster seat, strapped to the big chair. The top of her head was through the glass, one arm was sandwiched between two jagged panes, and her smooth neck was exposed to the heavy triangular stalactites of glass just waiting to fall. I extricated her as quickly as I could - and couldn't find a single scratch on her. Later, Trent put on his leather gloves to clean everything up, and found that those big pieces were barely hanging in the frame. I think her guardian angels are working overtime.
We have people ask us all the time how Angelee is doing. By all respects, she seems to be a fairly normal girl. She complains when it is time to take a nap, loves to sing and to be sung to, runs through the grass, would eat fruit all day long, talks on her calculator "cell phone," and sometimes plays nicely with her baby brothers. I looked up a list of "What Your Three-Year-Old Should Be Doing Now," and she's doing fairly well.
She should be able to build a tower of 4-5 blocks. Check. If the blocks are interlocking like Mega Blocks, her tower will be more like 10-15 blocks.
She should walk up steps, alternating feet. She was able to do this by last Thanksgiving.
She should pay attention for about three minutes. I've never actually timed this, but I'm pretty sure that she has approximately this kind of attention span. Raisins, fruit snacks, and chasing our cats will increase this time. Sometimes she won't sit still at all. I think this is also normal behavior!
She should turn pages in a book one at a time. Yes, she does this, but she starts from the back and turns the pages towards the front. Don't try to correct here - that's the way she likes it right now!
She should remember what happened yesterday. I just asked her what we did yesterday, and she told me, "Gram and Pop and you and me and Daddy ummm... have a party. (singing) Party, party!" We celebrated her birthday yesterday because we were at a family reunion on her actual birthday.
She should know some numbers, but not always in the right order. I just asked her to count for me, and she said, "One two fee, fo, seben, eight, nine, ten!" Check.
She should be able to look through a book alone, and like to be read to. Definitely, on both counts. She has found a series of Winnie the Pooh books we got (thanks, Grandma Jeanne!) when the oldest boys were little. She hauls them around in her stroller, sits down with four or five of them, and reads to herself. Last night she had two grandmas reading stories to her, and she loved it.
She should be able to count 2-3 objects. Not really. She know plurals, so she knows the difference between one sandwich and two sandwiches, but if you ask her if she'd rather have two pieces of candy or three, she'll say "two". Maybe she's smarter than I'm giving her credit for.
She should be able to follow simple one-step commands. Yup. Sometimes she will follow two-step instructions, too. And sometimes she won't do anything we ask.
She should be able to use 3-5 word sentences. Check. She's been eating lunch as I type, and just told me that she's all done with her sandwich and apples. "Now mine can haf some foot sacks (fruit snacks)!"
She should be able to ask short questions. She was looking over the play dishes we got her for her birthday, and held up a spatula. "What this is?" was her question. I love seeing her big, open, blue eyes when she wants to know something.
She should be able to name at least one color correctly. Check. I think she knows all the primary and secondary colors.
She should know her first and last name. Well, she knows her first name, anyway. She has just discovered the letter "L", and pronounces it in an exaggerated way when she says, "An-zha-LAY!" I haven't thought to teach her about last names.
She should be able to recognize and understand most common objects and pictures. Check. Some of our favorite quiet-time toys are cheap picture books that we have put familiar things in for her to look at. She loves to look at one book that is full of family members. We used that one at the hospital, to help her remember her family.
So what has she been up to? This summer she flushed half of a package of feminine products down the toilet, resulting in our basement flooding with raw sewage. She single-handedly got us three floods, four costly visits from the plumber, and a forced evacuation for a week.
This was followed up by her tipping her chair over and crashing into the sliding glass door. The whole family watched. She was very still, staring straight up while sitting in her booster seat, strapped to the big chair. The top of her head was through the glass, one arm was sandwiched between two jagged panes, and her smooth neck was exposed to the heavy triangular stalactites of glass just waiting to fall. I extricated her as quickly as I could - and couldn't find a single scratch on her. Later, Trent put on his leather gloves to clean everything up, and found that those big pieces were barely hanging in the frame. I think her guardian angels are working overtime.
We have people ask us all the time how Angelee is doing. By all respects, she seems to be a fairly normal girl. She complains when it is time to take a nap, loves to sing and to be sung to, runs through the grass, would eat fruit all day long, talks on her calculator "cell phone," and sometimes plays nicely with her baby brothers. I looked up a list of "What Your Three-Year-Old Should Be Doing Now," and she's doing fairly well.She should be able to build a tower of 4-5 blocks. Check. If the blocks are interlocking like Mega Blocks, her tower will be more like 10-15 blocks.
She should walk up steps, alternating feet. She was able to do this by last Thanksgiving.
She should pay attention for about three minutes. I've never actually timed this, but I'm pretty sure that she has approximately this kind of attention span. Raisins, fruit snacks, and chasing our cats will increase this time. Sometimes she won't sit still at all. I think this is also normal behavior!
She should turn pages in a book one at a time. Yes, she does this, but she starts from the back and turns the pages towards the front. Don't try to correct here - that's the way she likes it right now!
She should remember what happened yesterday. I just asked her what we did yesterday, and she told me, "Gram and Pop and you and me and Daddy ummm... have a party. (singing) Party, party!" We celebrated her birthday yesterday because we were at a family reunion on her actual birthday.
She should know some numbers, but not always in the right order. I just asked her to count for me, and she said, "One two fee, fo, seben, eight, nine, ten!" Check.
She should be able to look through a book alone, and like to be read to. Definitely, on both counts. She has found a series of Winnie the Pooh books we got (thanks, Grandma Jeanne!) when the oldest boys were little. She hauls them around in her stroller, sits down with four or five of them, and reads to herself. Last night she had two grandmas reading stories to her, and she loved it.
She should be able to count 2-3 objects. Not really. She know plurals, so she knows the difference between one sandwich and two sandwiches, but if you ask her if she'd rather have two pieces of candy or three, she'll say "two". Maybe she's smarter than I'm giving her credit for.
She should be able to follow simple one-step commands. Yup. Sometimes she will follow two-step instructions, too. And sometimes she won't do anything we ask.
She should be able to use 3-5 word sentences. Check. She's been eating lunch as I type, and just told me that she's all done with her sandwich and apples. "Now mine can haf some foot sacks (fruit snacks)!"
She should be able to ask short questions. She was looking over the play dishes we got her for her birthday, and held up a spatula. "What this is?" was her question. I love seeing her big, open, blue eyes when she wants to know something.
She should be able to name at least one color correctly. Check. I think she knows all the primary and secondary colors.
She should know her first and last name. Well, she knows her first name, anyway. She has just discovered the letter "L", and pronounces it in an exaggerated way when she says, "An-zha-LAY!" I haven't thought to teach her about last names.
She should be able to recognize and understand most common objects and pictures. Check. Some of our favorite quiet-time toys are cheap picture books that we have put familiar things in for her to look at. She loves to look at one book that is full of family members. We used that one at the hospital, to help her remember her family.
So - I guess she is fairly normal after all. She does have a few minor reminders of her accident. She has a tongue thrust that she didn't have before her fall, for example. And it's time to take care of her loose screw. But, today especially, we are so heart-glad to have her here. My insides just shrink up when I think back to that day, and all the long days that came after. I still can't open the window she went out. Trent still has flashbacks of seeing her little body disappear out the window. We really have been blessed. I think I'll go hug her until she squirms free.
Tuesday, April 12, 2011
A New Room
Angelee has a new bedroom. Her baby brothers grew too smart to stay in Mom's bedroom. As they stir in the middle of the night, they knew that Mom was right there, sleeping in the bed across the room. Dinner was only a a little wail away. As a result of baby feeding, baby feeding, and Angelee's nightmares, I've been seriously sleep-deprived. I'm only a few minutes away from hallucinations. Unfortunately, the closest bedroom to mine is Angelee's. And the next closest bedroom is all the way downstairs.
Angelee's nightmares started at the accident. I can't say that I blame her - I can't imagine many more scary situations. Many times, she just cries out, but sometimes it's a horrific scream. Her daddy and I rush to her bedside, trying to calm the frenzied girl, the galloping heart, and the shaking. Her last dream had to do with a scary car (?) which burst through the front door, came down the hall to her room and growled at her before falling down the stairs. She will often reenact the events for us over the next few days, as it clearly terrifies her. Fortunately, her bad dreams have been getting fewer and overall milder, or I wouldn't think of moving her away from me.
With the exception of her first night in the hospital, she has never been away from us. From the night of her peaceful birth at home, she has been where I, or her daddy, could hear her breathe. I'm excited, and sad, that my baby girl is growing up.
Last night was her first night in her new room. She slept wonderfully. Her bed is only two hops away from her most caring brother, with two night-lights and a door that squeaks if she tried to wander. I hate having her so far away, but it's working out. She loves her freshly-painted new space, and the dresser where she can reach all the drawers. And she is so happy to get in her "tiny little bed." Sleep well, my little angel.
Angelee's nightmares started at the accident. I can't say that I blame her - I can't imagine many more scary situations. Many times, she just cries out, but sometimes it's a horrific scream. Her daddy and I rush to her bedside, trying to calm the frenzied girl, the galloping heart, and the shaking. Her last dream had to do with a scary car (?) which burst through the front door, came down the hall to her room and growled at her before falling down the stairs. She will often reenact the events for us over the next few days, as it clearly terrifies her. Fortunately, her bad dreams have been getting fewer and overall milder, or I wouldn't think of moving her away from me.
With the exception of her first night in the hospital, she has never been away from us. From the night of her peaceful birth at home, she has been where I, or her daddy, could hear her breathe. I'm excited, and sad, that my baby girl is growing up.
Last night was her first night in her new room. She slept wonderfully. Her bed is only two hops away from her most caring brother, with two night-lights and a door that squeaks if she tried to wander. I hate having her so far away, but it's working out. She loves her freshly-painted new space, and the dresser where she can reach all the drawers. And she is so happy to get in her "tiny little bed." Sleep well, my little angel.
Sunday, April 3, 2011
What Gets Under Your Skin?
The first little blue line we saw in the scar in front of Angelee's ear has disappeared. The line was really one of the stitches that the surgeon had used to sew up the layers of tissue inside her noggin before they put her skin back on. The line looked darker blue for a couple of days, and now - it's gone. I guess that stitch worked its way up and out.
The other little blue stitch, over the top of her ear, took a bit longer. I was brushing Angelee's hair today - she'll let me do it now, if I'm gentle and distract her - when I noticed a dark blue thread just sitting there. I brushed at it with my fingertip, and it came off. No hole, no blood, no evidence that this little bit of foreign matter had ever been under her skin. I wish all the little things that get under my skin would resolve so neatly and quietly... maybe I just shouldn't let them in to begin with!
The other little blue stitch, over the top of her ear, took a bit longer. I was brushing Angelee's hair today - she'll let me do it now, if I'm gentle and distract her - when I noticed a dark blue thread just sitting there. I brushed at it with my fingertip, and it came off. No hole, no blood, no evidence that this little bit of foreign matter had ever been under her skin. I wish all the little things that get under my skin would resolve so neatly and quietly... maybe I just shouldn't let them in to begin with!
Monday, March 28, 2011
Words and More Words
When we were at the doctor's last week, he asked us how Angelee's speech is coming along. She's learning new words all the time, we assured him. He paused and looked at us sternly. "Yes, but how many words can she say?" he asked. "Oh, I don't know," I stammered, "I haven't really kept a tally for a while." With a now-visible twinkle in his eye, he teased us about it, and my heart rate went back down. For a moment there, I thought we were supposed to have been keeping track, and I felt like I was back in my old nightmare of having a math test I hadn't studied for.
So! When I got back home, I thought I'd try to capture her current vocabulary and compare it to the just-after surgery tally and the before-accident one. As it turns out, she has a bunch of new words, but not as many as I had expected. The real change (as is developmentally proper for this age) has been in how she puts the words together. She's understanding more, and stringing her thoughts along in ever-increasingly sophisticated ways. She speaks in 5- or 6- word sentences, and uses whole phrases now, such as "I like it" (always in the same cheerful sing-song tone).
The other day I was washing her hair. She was happily singing songs without words (she likes how her voice echoes in the shower or tub - who doesn't?) until I poured water on her head to rinse out the shampoo. Her singing quickly changed to shrieking, just as Daddy walked in the room. "She loves this part," I laughed. Angelee quickly contradicted me. "NO!" she yelled. "NO! Angelee no 'I like it!'" The funny part is, she yelled the "no" and sweetly intoned the "I like it."
It's good to have something happy with which to fill our hearts. My heart is full and grateful to have all this.
So! When I got back home, I thought I'd try to capture her current vocabulary and compare it to the just-after surgery tally and the before-accident one. As it turns out, she has a bunch of new words, but not as many as I had expected. The real change (as is developmentally proper for this age) has been in how she puts the words together. She's understanding more, and stringing her thoughts along in ever-increasingly sophisticated ways. She speaks in 5- or 6- word sentences, and uses whole phrases now, such as "I like it" (always in the same cheerful sing-song tone).
The other day I was washing her hair. She was happily singing songs without words (she likes how her voice echoes in the shower or tub - who doesn't?) until I poured water on her head to rinse out the shampoo. Her singing quickly changed to shrieking, just as Daddy walked in the room. "She loves this part," I laughed. Angelee quickly contradicted me. "NO!" she yelled. "NO! Angelee no 'I like it!'" The funny part is, she yelled the "no" and sweetly intoned the "I like it."
It's good to have something happy with which to fill our hearts. My heart is full and grateful to have all this.
Friday, March 25, 2011
A Loose Screw?
It was time to visit the neurosurgeon for our post-surgery visit. Has it really been six weeks? Life is never boring at our house, and the weeks seem to fly by. We had three concerns for the doctor: pain, blue marks, and a bump.
Occasionally, Angelee complains of pain around her left ear. Sometimes she will look concerned, and rub the area, and sometimes it seems like the pain is more acute. She'll stop everything, yelp, "Owee! Right here!" and point in front of her ear. The doctor said this is caused by the nerves regrowing. If she were older, she would likely describe it as sudden, sharp pains, an occasional dull ache, and tingling or pins and needles. This is quite normal, and in fact, the doctor said she was healing very quickly. He wouldn't have expected this reaction for another month or two. Score.
We have noticed a small but distinct dark blue line in the middle of the scar right in front of Angelee's left ear. Another line was slightly less visible over the top of her ear. We wondered if it had anything to do with her painful episodes, or if it was a vein regrowing there. It turned out to be the stitches below her skin. They are dissolvable, but sometimes the body will "spit them out" instead of absorbing the material. The doctor described how the body moves the offending part up through the layers of skin. We may see the ends of the stitch poking out, or just find it on her pillow one morning. Again, normal.
Angelee has a bump on the side of her head. It's hard and round, just behind her left temple. At first, we wondered if she had bonked herself, but it didn't go away. It felt like... a screw. Holy bananas, Batman, does our little girl have a few screws loose? Yep, it's a screw. It might be that one of the screws has just raised up higher than it should, or it might actually be loose. We'll keep an eye on it to make sure it doesn't get any higher, or that the skin doesn't look strained over the top. If he needs to, he'll do a same-day surgery, make a little slit there, and take the screw out. For now, the implant feels sturdy, and he doesn't want to be taking anything out for another few months. So this one is a "wait and see."
All in all, the doctor was pleased with her progress. She still won't talk to him, but she looked at him this time, and even cracked a shy smile. He's a wonderful doctor and a nice man, but I wouldn't mind if we don't see him often enough for Angelee to really get to know him!
Occasionally, Angelee complains of pain around her left ear. Sometimes she will look concerned, and rub the area, and sometimes it seems like the pain is more acute. She'll stop everything, yelp, "Owee! Right here!" and point in front of her ear. The doctor said this is caused by the nerves regrowing. If she were older, she would likely describe it as sudden, sharp pains, an occasional dull ache, and tingling or pins and needles. This is quite normal, and in fact, the doctor said she was healing very quickly. He wouldn't have expected this reaction for another month or two. Score.
We have noticed a small but distinct dark blue line in the middle of the scar right in front of Angelee's left ear. Another line was slightly less visible over the top of her ear. We wondered if it had anything to do with her painful episodes, or if it was a vein regrowing there. It turned out to be the stitches below her skin. They are dissolvable, but sometimes the body will "spit them out" instead of absorbing the material. The doctor described how the body moves the offending part up through the layers of skin. We may see the ends of the stitch poking out, or just find it on her pillow one morning. Again, normal.
Angelee has a bump on the side of her head. It's hard and round, just behind her left temple. At first, we wondered if she had bonked herself, but it didn't go away. It felt like... a screw. Holy bananas, Batman, does our little girl have a few screws loose? Yep, it's a screw. It might be that one of the screws has just raised up higher than it should, or it might actually be loose. We'll keep an eye on it to make sure it doesn't get any higher, or that the skin doesn't look strained over the top. If he needs to, he'll do a same-day surgery, make a little slit there, and take the screw out. For now, the implant feels sturdy, and he doesn't want to be taking anything out for another few months. So this one is a "wait and see."
All in all, the doctor was pleased with her progress. She still won't talk to him, but she looked at him this time, and even cracked a shy smile. He's a wonderful doctor and a nice man, but I wouldn't mind if we don't see him often enough for Angelee to really get to know him!
Thursday, February 24, 2011
Post-Surgery Diet
My Registered Dietitian sister-in-law once told me that after you have had surgery, your body needs proteins to rebuild and heal. Maybe that is why Angelee has become so picky about her food.
We sit down to a (I thought) tasty and well-rounded dinner of turkey, mashed potatoes and gravy, vegetables, stuffing, and cranberries (thanks to the great Man-cook for my birthday dinner!), and what are the first words out of Angelee's mouth? Everyone else said something along the lines of "Yum!' But Angelee wrinkled up her nose and proclaimed, "I need meat!"
She picks the fish out of our sweet and sour rice. She eats the ham off the baked potatoes. She liberates the lunchmeat out of the sandwich and leaves the bread. She scoops the beef out of a taco. We hear it often, "I need meat!" She makes us laugh, our little carnivore.
We sit down to a (I thought) tasty and well-rounded dinner of turkey, mashed potatoes and gravy, vegetables, stuffing, and cranberries (thanks to the great Man-cook for my birthday dinner!), and what are the first words out of Angelee's mouth? Everyone else said something along the lines of "Yum!' But Angelee wrinkled up her nose and proclaimed, "I need meat!"
She picks the fish out of our sweet and sour rice. She eats the ham off the baked potatoes. She liberates the lunchmeat out of the sandwich and leaves the bread. She scoops the beef out of a taco. We hear it often, "I need meat!" She makes us laugh, our little carnivore.
Wednesday, February 16, 2011
Home Again Again
We were able to get our angel home later on Friday night. Here she is, ready to ditch the hospital and go home with a soft crocheted cap instead of the hard helmet.
And here it is Wednesday afternoon, and I'm just now getting around to telling about it. We've just been busy since then. It reminds me of when Angelee was in the hospital the first time and her first-grader brother, trying to find positives in the situation, said, "Well, at least it is quieter around here." Yes, it is quieter when our little spitfire isn't here. But it's a too-empty, not-good kind of quiet. I like my active house with our happy, on-the-go family. It's just not right when we aren't all here.
Some random notes from in the hospital: Angelee slept really well in the hospital this time. Sleeping helps her to heal, and it helps Dad not to be a basket case in the morning. The hospital gives plain cloth dolls (with hospital gowns) to the children to decorate. The staff can use the dolls to demonstrate procedures, too. Angelee loved her dolly, and wanted Mommy to draw lots of happy faces on it. It's neat that volunteers make these dolls to help so many sick kids!
Angelee's head drain worked better this time, and didn't spill out onto her head and pillow. That was kind of gross last go around. After surgery, they leave a small tube under her skin, connected to a little plastic ball. The ball slowly fills up with fluid (we called it Angelee juice) that otherwise would have made her head and face swell up. The drain wasn't working right for the last surgery, and she swelled up. This time, however, we had very little swelling, even after we went home. Yes, she swelled. Her face was pretty lopsided for a couple of days. But she didn't get a black eye, and her left eye didn't even swell shut. Now she's looking pretty good - except for the long line of stitches snaking across her head. Here is her first self-portrait, taken when she stole my camera. You can see a bit of swelling:
And here it is Wednesday afternoon, and I'm just now getting around to telling about it. We've just been busy since then. It reminds me of when Angelee was in the hospital the first time and her first-grader brother, trying to find positives in the situation, said, "Well, at least it is quieter around here." Yes, it is quieter when our little spitfire isn't here. But it's a too-empty, not-good kind of quiet. I like my active house with our happy, on-the-go family. It's just not right when we aren't all here.
Some random notes from in the hospital: Angelee slept really well in the hospital this time. Sleeping helps her to heal, and it helps Dad not to be a basket case in the morning. The hospital gives plain cloth dolls (with hospital gowns) to the children to decorate. The staff can use the dolls to demonstrate procedures, too. Angelee loved her dolly, and wanted Mommy to draw lots of happy faces on it. It's neat that volunteers make these dolls to help so many sick kids!
We were initially told that she had damaged the speech center of her brain, and may not talk or understand language. Her CT scans now show a completely empty spot where her brain was damaged. Her language skills now are nothing short of miraculous, and even better now than before the fall. It was nice this time that she could tell us when it hurt. "Owie, right here."
And here she is, with a happy brother, two days after surgery. This is the most swelling she had.
Her brothers are sure happy to have her back home and doing so well. Here she is, singing with another brother on the piano. Love it!
Friday, February 11, 2011
Grateful
Things are going very well. Angelee got the second IV out, and the first IV line unhooked from the pump. She is taking in all of her food and liquids by mouth (but they like to leave one IV in until it's time to go home, just in case). The drain in her head just came out, and she doesn't have to be hooked up to all the constant monitors. She is bouncing around the room, asking for apple juice. Sip. Chockee (chocolate) milk!. Sip. Water. Sip. Shoes! No, the other shoes. How about Mom's shoes? And can we go for a walk?
If she keeps this up, they will let her come home tonight. Happy dance!
I am so grateful for the miracles modern medicine can pull off. I am so grateful for our bodies. They are amazing machines! I am grateful for all the kind people who make helping sick kids their profession. I am grateful Angelee is doing so well. Thank you for your prayers!
If she keeps this up, they will let her come home tonight. Happy dance!
I am so grateful for the miracles modern medicine can pull off. I am so grateful for our bodies. They are amazing machines! I am grateful for all the kind people who make helping sick kids their profession. I am grateful Angelee is doing so well. Thank you for your prayers!
Thursday, February 10, 2011
Surgery, Part III
Here we are, back at the hospital for Angelee's third surgery. She is going under the knife (what a great expression) today to get the synthetic plate put in her head. We like our girls good and hard-headed.
She didn't get in to surgery until about 1:30 this afternoon. The doctor said that it looked like she had been regrowing some skull, so he'd try to keep as much of it as he could. He'd rather cut out some of the implant than new bone. Good doc. They said the surgery would likely last about 2 1/2 hours, so we're not anticipating hearing anything until later this afternoon. The nurse popped in after the first hour (while I was grabbing some lunch, of course) and said everything was going well. So for now, we just sit and wait. I guess I won't be home for dinner, after all (and there is a yummy roast in the crockpot, too!).
Wednesday, February 9, 2011
Big Day Tomorrow
Well, it looks like we'll be going back to the hospital tomorrow. She doesn't have the first slot, so we don't have to leave quite so early. On the other hand, it's a bit more waiting time. Not much, though.
Her daddy took Angelee to the hospital today to do the pre-op work. Paperwork, paperwork, and more paperwork, a quick visit with the surgeon, a bloodwork poke for the poor girl, and her branding. Now she's got a sticker on her back and a "watch" (blue plastic hospital ID bracelet) on her wrist. She did pretty well until she saw the doctor, and then she got a panicky look on her face, jumped into Daddy's arms, and tried to hide. I don't think she'll be very excited when she figures out where we are going tomorrow.
Wish us luck tomorrow!
Her daddy took Angelee to the hospital today to do the pre-op work. Paperwork, paperwork, and more paperwork, a quick visit with the surgeon, a bloodwork poke for the poor girl, and her branding. Now she's got a sticker on her back and a "watch" (blue plastic hospital ID bracelet) on her wrist. She did pretty well until she saw the doctor, and then she got a panicky look on her face, jumped into Daddy's arms, and tried to hide. I don't think she'll be very excited when she figures out where we are going tomorrow.
We got the model of her skull they used to make her implant.
With the results of her last CT scan, the company made a life-sized 3-D model of her poor little head.
So this is what she looks like right now, with a hole in the side of her head. The actual edges are very jaggedy, but the doctor drew on this little skull model to show where he was going to cut.
And here is the implant they made to fit the hole nicely:
Fits so well!
And this is what she'll look like tomorrow night. Nice and sturdy, but I'll always feel like she's fragile.
Sunday, February 6, 2011
Surgery Ahead
Sorry. Bad pun. I couldn't resist.
Angelee is scheduled for surgery this Thursday. We'll be taking her in on Wednesday to get all checked in with the wrist bracelet (which she hates) and the blood tests (which she hates more) and the paperwork (which I hate). We'll go home, try to settle our last-minute details, get up at o'dark-hundred the next morning and make the drive back. It doesn't seem as long now since we drove over 750 miles last week for the funeral in Alaska (and that was after the seven-hour plane flight).
So we'll spend this week cleaning, resting up, and playing. I like playing at home with my kidlets. They are fun. Angelee just came in, upset, and told me, "Mama! Nate. Foo. Boom. No!" Evidently the kids (Nate and Foo) had been rough-housing and one had made the other fall down (boom). She doesn't like it when they get hurt. Now she's saying, "Need potty. Shappy (her word for sucker). Yeah! Potty? Mama? Potty, peesh? Shap-py!" Can you tell that we're potty training? And what her favorite reward is? Oh, I'd better go take her. She's unplugging my computer.
I'll leave you with a shot of the sticky girl, eating a candy stick she got at church. So happy!
Angelee is scheduled for surgery this Thursday. We'll be taking her in on Wednesday to get all checked in with the wrist bracelet (which she hates) and the blood tests (which she hates more) and the paperwork (which I hate). We'll go home, try to settle our last-minute details, get up at o'dark-hundred the next morning and make the drive back. It doesn't seem as long now since we drove over 750 miles last week for the funeral in Alaska (and that was after the seven-hour plane flight).
So we'll spend this week cleaning, resting up, and playing. I like playing at home with my kidlets. They are fun. Angelee just came in, upset, and told me, "Mama! Nate. Foo. Boom. No!" Evidently the kids (Nate and Foo) had been rough-housing and one had made the other fall down (boom). She doesn't like it when they get hurt. Now she's saying, "Need potty. Shappy (her word for sucker). Yeah! Potty? Mama? Potty, peesh? Shap-py!" Can you tell that we're potty training? And what her favorite reward is? Oh, I'd better go take her. She's unplugging my computer.
I'll leave you with a shot of the sticky girl, eating a candy stick she got at church. So happy!
Tuesday, January 18, 2011
Grandpa Ras
Angelee is a lucky girl to have three sets of grandparents who adore her. Mom's folks and Dad's folks, of course, and the bonus grandma and grandpa in Alaska. What loving, warm-hearted people they are! Years ago, when the older boys' father died, Grandma and Grandpa Ras could have let the relationships grow distant. Instead, they continued to cheer us on in our challenges and achievements, welcoming in a new "son-in-law," Angelee, and the twins like they were blood relations. But families are made of love more than blood, and we've always felt the love-ties bonding our families together.
Grandpa Ras is one of the most accepting, big-hearted people we've ever known. We love his wry sense of humor, his funny emails, his gruff but gentle voice. Never would a birthday go by without his warm-wishes phone call. We could always count on his optimistic, it-will-work-out faith. Grandpa Ras, you are a stalwart rock of goodness; a beacon of the right in an uncertain world. Thank you for the rich legacy you so carefully built for us. We will truly miss you.
Grandpa Ras is one of the most accepting, big-hearted people we've ever known. We love his wry sense of humor, his funny emails, his gruff but gentle voice. Never would a birthday go by without his warm-wishes phone call. We could always count on his optimistic, it-will-work-out faith. Grandpa Ras, you are a stalwart rock of goodness; a beacon of the right in an uncertain world. Thank you for the rich legacy you so carefully built for us. We will truly miss you.
Wednesday, January 5, 2011
And the Doctor Says...
First of all, I have to give a big THANK YOU to the many folks who have told me "good luck" or "we're praying for you" (and an extra big thanks to the gold-hearted lady who brought us dinner tonight!). I've had quite a few people ask me to let them know how the doctor's visit went. If I neglect to talk to you directly, please consider this your phone call. There are never enough hours in the day to do everything you ought to be doing, are there?
We finally got in to see the neurosurgeon today. The holes in Angelee's skull are substantially larger now, and the doctor was concerned, but not completely surprised. "This does happens sometimes," he said, and with his demeanor said, "but I was hoping it wouldn't." She got a CT scan to map out the area, and a new plate will be precision-fitted to the space. She will need another surgery to put it in, and possibly another surgery in a few years for a bigger plate.
We have a few things to think about and decide:
1) When to have the surgery, and
2) What kind of plate to have put in.
1) When. It will take a week or two for the replacement piece to be made. We could do the surgery then, or wait. The doctor said we could wait six weeks to see if her own bone would grow back. With such a large hole, however, the chances of bone filling it all in are very slim. Her brain in basically unprotected right now, so she'll have to be very careful (and wearing her helmet) until everything is secure.
2) There are two different companies that make bone flap replacements. The doctor said they were about the same to him. We have the information about both, and need to do some research to choose one.
So that's our report. Now we have some researching and deciding to go do.
We finally got in to see the neurosurgeon today. The holes in Angelee's skull are substantially larger now, and the doctor was concerned, but not completely surprised. "This does happens sometimes," he said, and with his demeanor said, "but I was hoping it wouldn't." She got a CT scan to map out the area, and a new plate will be precision-fitted to the space. She will need another surgery to put it in, and possibly another surgery in a few years for a bigger plate.
We have a few things to think about and decide:
1) When to have the surgery, and
2) What kind of plate to have put in.
1) When. It will take a week or two for the replacement piece to be made. We could do the surgery then, or wait. The doctor said we could wait six weeks to see if her own bone would grow back. With such a large hole, however, the chances of bone filling it all in are very slim. Her brain in basically unprotected right now, so she'll have to be very careful (and wearing her helmet) until everything is secure.
2) There are two different companies that make bone flap replacements. The doctor said they were about the same to him. We have the information about both, and need to do some research to choose one.
So that's our report. Now we have some researching and deciding to go do.
Thursday, December 23, 2010
The Next Appointment
Concerned about Angelee's newly squishy head, we called the doctors (after calling the insurance company to make sure it would be covered, and to see if we needed pre-authorization. Love that red tape!). They wanted us to come right in and be seen by the doctor who had done the original surgeries. But he is out for Christmas, spending the money we're paying him.
They got us in for the next possible opening - at the end of the first week in January.
Oh, and we should keep the girl quiet until then. No running or jumping or bonking or falling.
And she shouldn't wear the helmet. It might make the bone absorb faster. Just watch her carefully.
Yup. No problem. I don't have anything else in the world to do right now than to make sure a two-year-old doesn't act like a two-year-old. Forgive the sarcasm - I guess I'm still feeling a little bit grumpy about it.
Monday, December 20, 2010
Here We Go Again
It was midnight and the house was quiet. All the children were asleep - or nearly all. One sweet baby woke up just as I was slipping into bed, and the tired little tyke fought sleep for a long time. I held him and reached for a notebook to jot down my thoughts, planning on typing it out later. He'd grin at me, a bright toothless smile, then collapse on my shoulder to rub his eyes. He might fall asleep again, but I didn't know if I could.
At church Daddy was holding Angelee. He stroked the side of her head, fuzzy with regrowing hair. With concern in his eyes, he signed a quick message to me. Balancing a fussy baby, I couldn't see clearly, but it looked like he was worried about how bumpy her head was. It does seem like her nice, hard skull has gotten a few more lumps. Would a comb or brush scrape or catch on the uneven topography?
Later in the day, Daddy went to wake Angelee from a long but started-too-late nap. He came out chuckling, telling me that she was sound asleep - with her eyes wide open. He went back down the hall to her room, but didn't come out very quickly. It didn't take long for that nasty "what if" monster to grab me. What if she's quiet for so long, and has her eyes open... because she is... gone? What if today was the last day we got to keep out little girl? I'm not paranoid very often. But sometimes it just happens. He reappeared with a sleep-groggy girl in his arms, and I started to breathe again. Stupid monster.
I snuggled Angelee as she slowly woke up. I wrapped my arms warmly around her, and she nestled into me, trying to go back to sleep. I rubbed her soft cheeks, her silky hair, and then I felt it - the soft spot in her skull that he was trying to tell me about at church. In the middle of her once-smooth-and-hard-but-now-lumpy bone flap was a not-supposed-to-be-squishy spot. I felt sick. After a few moments, I gently probed the area. Yes, it was real, and soft, and slightly pulsating with Angelee's heartbeats. I was feeling Angelee's brain again, where there used to be hard, protective skull. What happened?
I got on the computer and did some research. It looks like it's not uncommon for a reinserted bone flap to get absorbed by the body. The chances of this happening are as high as 50% in some studies! There is a better chance of this happening with young patients (check), and when you have a larger flap (check). Why did they not tell us this? I hate it when a medical procedure is touted as being all great and wonderful without any mention whatsoever of negative outcomes or chance of failure or possible side effects. It's just not honest! It's not like having that knowledge would change what appears to be happening right now, but at least you could be prepared for a different possibility. I am angry, and afraid.
I am scared that my little girl will have to go through surgery again. I don't want her to have to go through all that. And what will they put back in to cover her new hole? Something artificial? Will her body reject it, too? Will it have to be replaced as she gets older and her head grows? "Replaced" sounds like such a dull, ordinary word to describe "cut open your head and mess around with your skull." I really don't know that I'm up to doing all this again.
I should be counting my blessings, feeling grateful that we have such an amazing miracle as simply still having our daughter alive. But as the dark winter storm outside pounds on my window with wind and rain, I can't help but cry a little bit. I'll have to let go of the "happily ever after." Again.
The baby is finally asleep, his rhythmic breathing calming my worried heart somewhat. I should rest, too. I don't know if I can.
At church Daddy was holding Angelee. He stroked the side of her head, fuzzy with regrowing hair. With concern in his eyes, he signed a quick message to me. Balancing a fussy baby, I couldn't see clearly, but it looked like he was worried about how bumpy her head was. It does seem like her nice, hard skull has gotten a few more lumps. Would a comb or brush scrape or catch on the uneven topography?
Later in the day, Daddy went to wake Angelee from a long but started-too-late nap. He came out chuckling, telling me that she was sound asleep - with her eyes wide open. He went back down the hall to her room, but didn't come out very quickly. It didn't take long for that nasty "what if" monster to grab me. What if she's quiet for so long, and has her eyes open... because she is... gone? What if today was the last day we got to keep out little girl? I'm not paranoid very often. But sometimes it just happens. He reappeared with a sleep-groggy girl in his arms, and I started to breathe again. Stupid monster.
I snuggled Angelee as she slowly woke up. I wrapped my arms warmly around her, and she nestled into me, trying to go back to sleep. I rubbed her soft cheeks, her silky hair, and then I felt it - the soft spot in her skull that he was trying to tell me about at church. In the middle of her once-smooth-and-hard-but-now-lumpy bone flap was a not-supposed-to-be-squishy spot. I felt sick. After a few moments, I gently probed the area. Yes, it was real, and soft, and slightly pulsating with Angelee's heartbeats. I was feeling Angelee's brain again, where there used to be hard, protective skull. What happened?
I got on the computer and did some research. It looks like it's not uncommon for a reinserted bone flap to get absorbed by the body. The chances of this happening are as high as 50% in some studies! There is a better chance of this happening with young patients (check), and when you have a larger flap (check). Why did they not tell us this? I hate it when a medical procedure is touted as being all great and wonderful without any mention whatsoever of negative outcomes or chance of failure or possible side effects. It's just not honest! It's not like having that knowledge would change what appears to be happening right now, but at least you could be prepared for a different possibility. I am angry, and afraid.
I am scared that my little girl will have to go through surgery again. I don't want her to have to go through all that. And what will they put back in to cover her new hole? Something artificial? Will her body reject it, too? Will it have to be replaced as she gets older and her head grows? "Replaced" sounds like such a dull, ordinary word to describe "cut open your head and mess around with your skull." I really don't know that I'm up to doing all this again.
I should be counting my blessings, feeling grateful that we have such an amazing miracle as simply still having our daughter alive. But as the dark winter storm outside pounds on my window with wind and rain, I can't help but cry a little bit. I'll have to let go of the "happily ever after." Again.
The baby is finally asleep, his rhythmic breathing calming my worried heart somewhat. I should rest, too. I don't know if I can.
Tuesday, November 23, 2010
Getting Sick
All the stitches are gone. The shorn side of her head is growing soft blond hair again. The incision, once a red, jaggedy gash, is now a gentle pink scar. She talks in three-word sentences, and adds to her vocabulary daily. Both hands worked evenly well to spoon in her dinner: fish, rice and vegetables, with peach cobbler for dessert. She ate it all. She can walk, run, and even dance on her tiptoes. When she wears her hat, she would look to anyone like a normal, active toddler. It's hard to think normal, though.
Recently, Angelee came down with a fever. I instantly plunge into worry mode. Normally I am a very calm parent. Really. But with Angelee, I have to look at it from every angle. Exactly how hot is she? I grab the thermometer every hour to check, ignoring her loud protests. What if it is...bad? She kept the fever for a few days, spiking to almost 103, but cooling off with a dose of Tylenol. She had cold-like symptoms, and we did have a cold going around the family, but I felt like it was something more.
I finally took her to the doctor, something I never do for a cold. He was not concerned, and sent us home with prescriptions for cold medicine and an antibiotic, just in case it got worse. He dismissed the sores around her mouth as normal cold sores, and left me feeling like something was missed.
The next day, when I found the sores in her mouth, I realized it was the Coxackie virus, or hand foot and mouth disease. It is characterized by several days of high fever (check), general feeling yucky (check), cold-like symptoms (check), painful blisters around and in the mouth (check), possible sores on hands and feet (only found one), loss of appetite (check) and pronounced grumpiness (double-check!). It lasts for about two weeks and generally goes away on its own. Pain reliever helps some, but just batten down the hatches and grit your teeth folks, because this one is a doosey.
Angelee was awful nasty irritable. She constantly wanted to be held, rarely wanted to eat, cried frequently, and work up every hour at night. She was a mess. We were a mess! It lasted about a week and a half, before slowly decreasing. It's so nice to have our girl back (again). I'd like to quit losing her. And one day, maybe I won't worry so much.
Recently, Angelee came down with a fever. I instantly plunge into worry mode. Normally I am a very calm parent. Really. But with Angelee, I have to look at it from every angle. Exactly how hot is she? I grab the thermometer every hour to check, ignoring her loud protests. What if it is...bad? She kept the fever for a few days, spiking to almost 103, but cooling off with a dose of Tylenol. She had cold-like symptoms, and we did have a cold going around the family, but I felt like it was something more.
I finally took her to the doctor, something I never do for a cold. He was not concerned, and sent us home with prescriptions for cold medicine and an antibiotic, just in case it got worse. He dismissed the sores around her mouth as normal cold sores, and left me feeling like something was missed.
The next day, when I found the sores in her mouth, I realized it was the Coxackie virus, or hand foot and mouth disease. It is characterized by several days of high fever (check), general feeling yucky (check), cold-like symptoms (check), painful blisters around and in the mouth (check), possible sores on hands and feet (only found one), loss of appetite (check) and pronounced grumpiness (double-check!). It lasts for about two weeks and generally goes away on its own. Pain reliever helps some, but just batten down the hatches and grit your teeth folks, because this one is a doosey.
Angelee was awful nasty irritable. She constantly wanted to be held, rarely wanted to eat, cried frequently, and work up every hour at night. She was a mess. We were a mess! It lasted about a week and a half, before slowly decreasing. It's so nice to have our girl back (again). I'd like to quit losing her. And one day, maybe I won't worry so much.
Tuesday, November 16, 2010
Stitches
I think I mentioned that Angelee has dissolving stitches in her fuzzy little scalp. Daddy counted them as she slept, and came up with 92. Nearly one hundred stitches - it's horrifically amazing. They start from her center forehead, at the hairline and curve gracefully to the back of her head, reversing to come up behind her ear, then jump up over the ear. The only place the scar will really show when her hair grows back is the four or five stitches there in front of her left ear.
They told us that the stitches would disappear between two to three weeks. A few days ago, I was putting our daily antibiotic ointment on the incision when a couple of the stitches came off under my fingers. I looked at them for a long time, fascinated at the technology in a gross sort of way. Since then, a few more have come off every day. She's only got five left now. I'm glad the incision has healed so well. Hopefully we'll be all knit together soon, and we'll be done with this phase.
I hear that vitamin E oil will help minimize the scarring, so she won't stab her head when she combs her hair. She'll happily wear a soft cap to keep her head warm in the cool autumn weather. I wonder how long it will take for her hair to grow back.
They told us that the stitches would disappear between two to three weeks. A few days ago, I was putting our daily antibiotic ointment on the incision when a couple of the stitches came off under my fingers. I looked at them for a long time, fascinated at the technology in a gross sort of way. Since then, a few more have come off every day. She's only got five left now. I'm glad the incision has healed so well. Hopefully we'll be all knit together soon, and we'll be done with this phase.
I hear that vitamin E oil will help minimize the scarring, so she won't stab her head when she combs her hair. She'll happily wear a soft cap to keep her head warm in the cool autumn weather. I wonder how long it will take for her hair to grow back.
In Her Own Bed
We finally got Angelee to sleep in her own bed. Not getting enough sleep is enough to make a person a tad loopy. Not enough sleep for a couple of days can produce grouchiness. Try two months. Nay, try two months AFTER being on a perpetual low-sleep diet due to twin babies. We had to sleep with her when her head was so delicate. But now her brain was protected all the way around by nice, strong skull. She didn't need us to pad her nighttime. It was time for a change in sleeping arrangements.
Angelee's bed is a bunkbed with a single bed on top and a full-sized futon on the bottom (she sleeps on the bottom, of course). The first time we put her on it, she looked so tiny on that big bed. She makes full use of it: sleeping on one side, then the other, rolling to the top, curled up or spread-eagled - she is a wiggly one. But after she was at the hospital, we folded it up to the futon since she wasn't using it.
I have put her down for naps on her futon-bed, and she sleeps there - but not willingly. I had an idea the other day, and folded the bed back down. As soon as she saw it, she ran over to it, jumped up, and excitedly cried, "Bed!" Then she figured out that jumping on the lower bunk of a bunkbead is not a good idea. Bonk. When it was naptime, she got into bed quite willingly. That night, Trent and I were nervous about how she would take sleeping by herself. We were all worked up for a long night.
We put her in bed, tucked her in with the quilt Gram made and her fuzzy, pink crocheted "blankie." I sang her a song, Daddy gave her a kiss, and we walked out and closed the door. We both waited for the wailing. Nothing.
We got ready for bed, blissfully without any "Angelinos." Some of her favorites when our backs were turned were pulling the covers off our bed, poking the sleeping babies, squirting lotion on our pillows, turning the lamps on and off, and eating lip balm. Really? She's still not crying? Is she breathing? We gingerly peeked in her room, only to find her in the exact same position we had put her, a sweet toddler-sized sleeping beauty. We celebrated by going to bed early.
Angelee's bed is a bunkbed with a single bed on top and a full-sized futon on the bottom (she sleeps on the bottom, of course). The first time we put her on it, she looked so tiny on that big bed. She makes full use of it: sleeping on one side, then the other, rolling to the top, curled up or spread-eagled - she is a wiggly one. But after she was at the hospital, we folded it up to the futon since she wasn't using it.
I have put her down for naps on her futon-bed, and she sleeps there - but not willingly. I had an idea the other day, and folded the bed back down. As soon as she saw it, she ran over to it, jumped up, and excitedly cried, "Bed!" Then she figured out that jumping on the lower bunk of a bunkbead is not a good idea. Bonk. When it was naptime, she got into bed quite willingly. That night, Trent and I were nervous about how she would take sleeping by herself. We were all worked up for a long night.
We put her in bed, tucked her in with the quilt Gram made and her fuzzy, pink crocheted "blankie." I sang her a song, Daddy gave her a kiss, and we walked out and closed the door. We both waited for the wailing. Nothing.
We got ready for bed, blissfully without any "Angelinos." Some of her favorites when our backs were turned were pulling the covers off our bed, poking the sleeping babies, squirting lotion on our pillows, turning the lamps on and off, and eating lip balm. Really? She's still not crying? Is she breathing? We gingerly peeked in her room, only to find her in the exact same position we had put her, a sweet toddler-sized sleeping beauty. We celebrated by going to bed early.
Friday, November 12, 2010
Happy Anniversary
Three years ago I married the sweetest man. I was pretty amazed that he was brave enough to take on a single mom toting five boys. Not only has he slipped happily onto the parenting role, but he is really good at it. He loves all the boys. He helps me teach and guide them. He looks over their homework. He plays pool with them. He teaches them how to mow the lawn and work in the yard. AND, if these wonderful hooligans weren't enough, he wanted more! So we added three little ones to our family. One for each year (don't count on that trend continuing). He is a great dad.
We spent our anniversary window shopping in a new furniture store we'd been wanting to check out. It was very romantic, looking at the fancy four-poster beds, the sumptuous pillows, and the plush bed linens. A nasty aroma spoiled the mood, and we had to stop and change a diaper. Oh, we had Angelee and the babies on our hot date with us. Then Angelee dropped a small ceramic ball, shattering it to tiny shards. And one twin started to get grouchy. And the other one got hungry. And Angelee didn't want to be strapped into the stroller any more. Time to go home.
But happy anniversary anyway, my dear. I can't say I didn't try to warn you about this happy chaos. But you seem to like it. It's nice to be loved and needed. And we do love you. Thanks for jumping over my flowers and into our lives.
We spent our anniversary window shopping in a new furniture store we'd been wanting to check out. It was very romantic, looking at the fancy four-poster beds, the sumptuous pillows, and the plush bed linens. A nasty aroma spoiled the mood, and we had to stop and change a diaper. Oh, we had Angelee and the babies on our hot date with us. Then Angelee dropped a small ceramic ball, shattering it to tiny shards. And one twin started to get grouchy. And the other one got hungry. And Angelee didn't want to be strapped into the stroller any more. Time to go home.
But happy anniversary anyway, my dear. I can't say I didn't try to warn you about this happy chaos. But you seem to like it. It's nice to be loved and needed. And we do love you. Thanks for jumping over my flowers and into our lives.
May the next year be even more full of joy than this one has been!
(And may it have fewer trips to the hospital) <3
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